I think we all know how isolating it is to be the parent of a special needs child.
We stand apart, on the edge of society, never quite feeling included.
At primary school, my boys were the only ones who were accompanied by ABA tutors in their classes. For each boy in a class of 30 that meant 29 other sets of parents who didn’t have a special needs child. Too many people to try to get to know. I would collect the boys some days from school and walk them home with their tutors, just so I felt a bit more included in the playground. It didn’t work very well as I had to rush from one section of the playground to another collecting all three. The logistics of having four boys, let alone four with autism.
We made some friends among the parents. It wasn’t easy. There was no ‘would your son like to come over after school?’ ‘it’s my turn to have your boy as you had mine last week’. Playdates had to be carefully orchestrated and holiday get togethers didn’t happen either as the boys continued with tutors during the holidays and anyway, not many children really wanted to come and play with my boys.
I felt the isolation more than they did in those days. They had a great time with us and with their tutors and they had ready made companions in each other.
Fast forward another ten years. We are still isolated. I see less people than I did when the boys were small. No after school gym club, cubs, school playground chats.
All those school mums are now parents to young adults, mostly at uni or college or on gap years. Those parents are to be seen on facebook, having mini breaks abroad, going out, seeing people. They don’t have to worry about their children on a day to day basis anymore. They certainly don’t have to find babysitters.
We do try. We try to be sociable. We can’t always get babysitters. We were invited to one Christmas party this year but we couldn’t go. It’s very often the case. Babysitters on Saturday nights don’t exist when you mostly employ young carers in their twenties. They are who the boys need to take them out and to hang out with, but they have their own lives.
We abandoned group dinner parties years ago. They inevitably became discussions about which secondary school to choose, which GSCEs their children were taking and then, university visits. All subjects we cannot engage with. It’s not just that it’s very hard to sit and listen to others discussing what our children will never do, but it’s so awkward sitting there in silence, unable to join in the conversation.
We are tired too. Physically tired. Often too tired to go out. I just want to watch Sunday night TV and knit, slumped on the sofa with my kittens.
I am conscious that I am too intense. Life for us is often serious. How can it not be? I don’t actually want to be distracted for an evening by just ‘chatting’ inconsequentially about ‘this and that’ (one of Benjamin’s favourite phrases). I want to engage if I am going to talk.
Four boys with autism. That’s a conversation stopper isn’t it? Or in many cases, unfortunately, a conversation wishing to be started by another desperate mother who wants to meet me and download about their child with autism. And seek my advice. I can’t do it. I simply do not have the mental stamina or the free hours to counsel others so now I have taken to avoiding our local area so I don’t get caught. How sad that sounds and how ungracious of me, not to support fellow parents.
I have a handful of close friends, confidants, who do understand. I would rather walk and talk with them once a month in a meaningful way than pretend to be enjoying myself at a social occasion.
I connect in different ways. I chat online to other mums who also have children with autism. I write these blogs and have another book ready to be published. My social circle is smaller yet wider in some ways thanks to social media.
I am not lonely. I have my wonderful boys to be with. We can do so much more now that they are older. We take them to the theatre, to art exhibitions and out to dinner. We always take them on holiday with us. They are our constant companions. Maybe others look longingly at us, our children in a frozen state of endless childhood, no empty nest here. We may be isolated but we are never lonely.